In February 2020, the European Commission unveiled the European Strategy for Data, a key driver of the EU digital transition over the next five years. The strategy aims to increase the availability of data and maximise the benefit of data-driven applications by creating common data spaces in areas such as health and the environment.

EFA, as a member of the European Patient’s Forum (EPF) Digital Health Working Group, contributed to the legislative process to structure the European data ecosystem. We participated in the European Commission consultation on the Data Strategy to deliver the voice of allergy and respiratory patients, along with their concerns and expectations of data in healthcare. We also contributed to EPF’s response to the White Paper on Artificial Intelligence and its role in health care.

From consent and privacy to personalised care, EFA demands that the digitalisation of health systems is centred in patient needs, accessibility, health literacy and empowerment.

EFA published a joint submission with the BBMRI-ERIC (a research infrastructure for biobanks and biomolecular resources) to the consultation on the legislative framework for the governance of common European data spaces in July. Together we argued that a health data space ambition should connect researchers with existing data infrastructures, research networks and patient groups in order to advance healthcare.